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Gena Bigler: Parents of special needs child must plan financially for two generations

Providing a healthy childhood for special needs children often includes providing for therapies, adaptive equipment and medical needs. And that doesn’t even include planning for future needs. Many special needs families must also plan for long-term care and special therapies.

Typically, family financial planning looks forward one generation. Most parents want to help their children get through college and help give them a solid start in life. Parents of a special needs child must plan for two generations; they need to plan for the entirety of their child’s life needs.

Planning ahead makes all the difference. Often this means planning housing for the child’s lifetime. From independent living to assisted living, housing for two generations is expensive. Most parents only plan for their own lifetime, trusting that their children will be living a successful, independent life without having to rely on parental support.

The parents of special needs children don’t have this luxury. They must plan for the expenses of their child’s entire lifetime as well. Thankfully, there is some help from government benefits to help pay for basic needs. Though medical coverage and government programs are constantly evolving, they should be an integral part of the planning process.

Beyond basic needs such as housing, many special needs children will need special care or therapies that government benefits don’t cover. For these, parents or grandparents may want to create a Special Needs Trust. The trust may be funded by gifts or more commonly by a parent’s or grandparent’s estate or life insurance.

Probably the hardest thing for parents to do is to think about not being there when their children need help. Planning ahead may be difficult or painful to do, but it is the only way to insure your child has a comfortable life.

On an airplane, the fight crew always insists that in case of an emergency, put on your oxygen mask before attempting to help anyone else. The same is true in financial security. You must have your economic house in order before planning for someone else. Though as a parent there is often a strong urge to put your needs aside to provide for your child, this can be a mistake in unpredictable economic times. I am certainly not suggesting sacrificing your child’s needs for any reason, but to balance their need with yours. Reserving a nest egg for retirement or unexpected emergency will take some financial pressure off. A confident and relaxed parent benefits the child in immeasurable ways.

When planning for a special needs person, especially a child, safety is paramount. Earning capacity may be limited or not possible, so every dollar matters. Looking decades into the future is impossible, but there are some ways to prepare. A skilled life care planner can help evaluate what may be possible. This will help you decide what future funding is most critical.

Some sort of assisted living may be necessary. A group home (these often have long waiting lists), a nursing facility or occasional in-home care may be sufficient. Researching what is available with an open mind before you need it will help you weigh the options more objectively. It will also help prepare you for the cost and get on the waiting list early. It is brutally hard to think about, but the child will be better served if a loved one plans out these options for them.

We all want the best for our children. Parents of special needs children have to work harder and plan further to make that happen.

Gena Bigler is passionate about public service and credits her time serving nonprofits in AmeriCorps and Volunteers in Service to America (V.I.S.T.A.) with teaching her extreme budgeting and bargain shopping. Gena is now CFO of McNay Settlement Group and serves on the board of the Lactation Improvement Network of Kentucky (L.I.N.K.). Gena would be happy to hear from you at lgbigler@gmail.com.


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